What experiences do we share, and what barriers confront us? Is it possible to replace our contemporary, medicalized culture with something more representative of us as complete beings? Are we ready for a real sense of community yet?
I think so.

May 27, 2007

The formulary of drugs in use against E. is growing. With it, the discomforts, side effects and dangers. Someone I know once said that I “...take medication strong enough to drop a horse” and it feels that way, often. It's no wonder some of us would give our right hoof for a good alternative.Among the quirky cures suggested (and rejected) by me, are: hot mineral baths, colonics, yoga, fasting, Black Strap molasses, Deadly Nightshade, ginger and licorice roots, mistletoe, magnets, mud baths and chiropractic adjustments. I am sure each suggestion has something to recommend it, but they are not what I had in mind. There has to be something else. A look at the past efforts of physicians and healers might suggest alternative therapies.

So, let us look to Rome.

Pliny the Elder was an accomplished man: a warrior, writer and, appointed by Emperor Vespasian, Prefect of Rome. He died as Prefect, and his death was extraordinary. When the volcano, Vesuvius, erupted and eventually smothered Pompeii and Herculaneum, Pliny the Elder set sail with the Roman fleet to observe and assist. Pliny the Younger reports that his uncle died from inhaling poisonous gases, while he stood on the deck of his ship in the Bay of Naples.

One of his enduring accomplishments is his encyclopedia of all the knowledge of his day. He wrote and compiled the 160-volume set and included medicinal treatments and cures for the most commonly encountered ailments of the time. Epilepsy was just such an ailment, and merited inclusion. According, to Pliny the Elder (c. 79 A.D.): "If lion fat is added, a slight taste cures epilepsy, provided that those who have taken it, at once, aid its digestion by running".

If you have no lion fat, Pliny directed: "A camel's brain, dried and taken in vinegar, cures epilepsy, as does the gall, taken with honey...". So, it seems you had a choice in Pliny's day over what animal you would use to effect a cure from E.: lion or camel.

In Witches, Druids and King Arthur, R. Hutton writes of a researcher "...collecting information on folk medicine in the border counties of England and Wales" who was startled at "the remedies confidently reported..." : a "...cooked hedgehog cures epilepsy." Among the Scottish Celts, "A magical cure for epilepsy was to bury a black [rooster] at the spot where the patient had his last fit".

(I vote "no" on the hedgehog treatment.)

In the United States, nearly 2,000 years after the death of Pliny the Elder, John George Hohman (1819), Reading, Berks County, Pennsylvania, published a little book of charms and cures against all sorts of things, from thievery, to worms in horses, to human ailing. He specifies that to cure epilepsy, one must "take a turtle dove, cut its throat, and let the person afflicted with epilepsy drink the blood." My grandfather's people were from neighboring Lancaster County, Pennsylvania, and I heard about this cure growing up, but no one ever tried it on me.

In the Andes mountains south of Ecuador, a cure for E. is still hunted, much to the chagrin of the World Wildlife Fund: the mountain tapir.

Craig Downer is a friend of the mountain tapir, and if you met him he could most probably tell you anything you would like to know: how the mountain tapir lives, what it eats, who its friends are. But there is no indication, in what Downer writes, that he has a care for the humans of the same territory. He has apparently never even learned the names of their tribes. Downer has a web site where this description can be found:"Indians will eat or sell the meat, and often use or sell the hooves and snout for folk medicine. It is believed that these provide cures for epilepsy and heart disease." (http://www.tapirback.com/tapirgal/mountain/poaching.htm)

Admittedly, wild game epilepsy cures are less subtle than are the herbal. Taking a cup of steeped flowers, leaves or roots is less dramatic than either blood-drinking or eating BBQ hedgehog ribs. But if one considers the time spent acquiring a wild animal, preparing it and then administering it to another person, one may conclude:the value of these sorts of cures is as dear as the affliction is distressing.

Some are willing to try anything to rid themselves of E...others have been willing to try what they have.

May 18, 2007

Once I made the decision to disclose my E. to everybody, I immediately ran into a barrier. It wasn't language, exactly, it was more an absence of language.

The initial reaction to telling someone I am epileptic never seems to vary: people offer me pity, then they want to know how epilepsy feels. They say things like: "I just can't imagine how terrible it must be for you" or "You poor thing! You'll never have a normal life, will you!"; next comes the inevitable pause, and they continue by asking me: "How does it feel when you...have one?"

Most people seem to have one particular kind of seizure in mind and this is the gold standard, what many people take E. to be. I have known folks who believe E. "isn't so bad" if you don't have "the fits" and I have been to family doctors and neurologists who firmly believe if you don’t have convulsions, then you don’t have epilepsy.

The first thing I tell those who ask is: I don't know how a convulsion feels. I am unconscious when they happen. I have never seen myself seize, nor have I seen anyone else seize. It’s this kind of answer that disappoints. Suddenly, they become disinterested in the whole thing, and in me. Why? Because they want to know what convulsive E. feels like and they really dislike the sense that they have been put off from finding out.

Some have said that a convulsion looks painful. So perhaps this is the root of the question: they want to know if we suffer pain with seizing.

I try to answer the question each time it is asked, but I don't know if I am making any real progress describing my experiences clearly. I'm sure I sound a little addled when I try to explain the subtleties of the run up to a seizure: afterall, it isn’t like describing a bad cold or even a heart attack. My intentions are good, but I always explain much more than they want to know about. I tell them that not every seizure is epilepsy, nor is it a convulsion.

Though the question of how we feel epilepsy is a simplistic one, it can be viewed as an opening in the door between our own hiding places and the rest of the world. "What does E. feel like?" is an overture toward understanding, even if it smacks of sensationalism.

Our problem is learning to define ourselves to others, to distinguish the individual from the overarching descriptions of E.

There are so many variations, so many types and kinds of epilepsy, and so much disinformation about E., that it becomes a difficult question to give an answer to. Each of us experiences E. in so many ways: from confusion and staring to rage or anger to that most dramatic of expressions, unconsciousness.

And each person who asks the question of us comes to it with their own preconceived notions.

How I feel about E. and how E. feels, are distinct questions whose answers are bound to our inarticulate, experiential Self. For generations, none of us has felt an obligation to reach outward to society, to try to make ourselves understood by them. Socialization, for persons with E. has been discouraged, as has community building.

Today, because we want to be more a part of the world, to have society respect us, we have discovered a need to find the language with which to identify ourselves and our experiences to others.

May 10, 2007

As one with E., have I authority and control over my own life? Have I autonomy: can I make decisions that reflect my moral code or my perceived reason for being? Do I retain agency: the authority to act for myself?

I ask these questions outright because there are those who believe that we persons with E. must not have charge of ourselves. They feel we may not act for ourselves, nor should we be allowed to exercise authority or control over our lives. Some believe persons with E. to be thoroughly discredited human beings, and they express these feelings openly.

An artifact of this point of view, characteristically experienced by persons with E., is social disintegration. It means a loss of unity or cohesion, and in the case of an individual, it can mean the loss of her accustomed rank, status, or prestige.

Social disintegration often takes place once E. has been disclosed. But it also takes place when someone witnesses our seizure activity and is “creeped out” by it. Suddenly, an individual loses status within her family, her workplace, her community. Where once her actions were admired, they become scrutinized; though her decisions were trusted, they are now suspected. She loses responsibility for important and unimportant things.

But the most distressing and frustrating thing she can lose authority and control over is her life story. A significant element of individual identity formation is control of one’s personal story. Of greater consequence is a sense of it's ownership. Ownership is expressed as the individual’s ability to tell her story to others, in her own manner, without hinderance. When a person is stigmatized by disability, ownership of her biography becomes threatened, and along with it, her sense of Self.

Inaccuracies and distortions are commonplace in the telling of a disabled person’s biography. Family members, spouses, caregivers and physicians frequently offer biographical information in the presence of the disabled, replete with errors. When they object or offer amendments to their own histories, the disabled are commonly rebuked and told they are mistaken, that their comments are unimportant, or that their memory of past events is faulty.

This sort of interplay cues the listener to draw a conclusion: disability has rendered the individual incapable and dependent, and so ownership of her story is void and becomes the property of its teller. Evidence of such supposition comes quickly, usually with the listener’s first question and who is addressed: the storyteller or its subject.

Whom the listener addresses is important: his action affirms or denies the agency of the disabled. It accepts or rejects her equality.

Like many of us, I have suffered the indignities of biographical distortion, and have had it explained to me after the fact that the storyteller knew it was inaccurate, but that it was "for my own good" in some way. Usually, "my own good" referred to a desire on the part of a family member to ensure that the doctor would take me seriously as a patient, and give me his unstinting attention.

My life story is important only to me and I feel secure in my agency. As an adult, I entrust the telling of my story to only one individual, apart from myself: my husband. He, better than most, understands the seminal nature of my personal tale. With a doctorate in folklore and mythology, his sensitivity to this crucial aspect of my life, is astonishing. But his is a rare outlook.

Unfortunately for many of us with disabilities, and particularly for those of us with E., the sensitivities of our helpers are not often keen. They become emotionally and intellectually charged with the notion that in order to protect us, they must diminish us and so often act against our most essential Self interests.

In 2003, Marta Russell wrote a commentary, "Nothing About Us Without Us: Human Rights and Disability":"...it remains the case that impairments are viewed as abnormalities and people who have them become devalued objects of the medical and social services establishment… the medical model persists and ignorance of the social model of disablement dominates. The social model emphasizes that institutions...impose "disability" upon those who have impairments by segregating and excluding them from the rights others enjoy."

She cites proposed language to a United Nations Disabled Peoples' Bill of Rights (which I am excerpting here). It offers insight into the widespread habit among the non disabled of disenfranchising us. It includes assertions that disabled persons must have the right to: "...personal integrity, freedom from... abuse by caregivers; to bodily and psychic integrity, including autonomy in decision-making...".

For generations, the E. community has been cocooned inside the "personal tragedy" model that suggests our epilepsy is sad, but individualized. We have been silent, reclusive, and at the mercy of the medical establishment. Coming out socially, even to speak amongst ourselves about our disability, has been a brave move for us to have made.

In time, we will find the means to step out more confidently, and perhaps more assertively. For now, we must be aware of the progress we have made and tuned into the possibilities we share for our collective future.

May 7, 2007

Owing to this very sexy, surgical practice, government and private donations have risen to unprecedented levels; a new sub-specialty of neurology has been created; pharmaceutical companies have worked overtime to deliver new drug therapies, and epilepsy research thrives.

But one must query whether a heightened technological approach to brain surgery really represents progress against epilepsy. If we look backwards a little, we may gain some unexpected perspective.

This image is titled Epilepticus sic curabitur ('The way to cure an epileptic'), from the Sloane Manuscript collection of medical manuscripts, 12th century, British Museum, London.

It represents what you think it represents: brain surgery. In this case, trepanation (opening the skull) and cauterization. Seems as if brain surgery to cure epilepsy is nothing new.

There were mystical, superstitious reasons for trepanation operations to be performed: it was thought that opening the skull cap would cause the demons of the sickness, poisonous gases or disease-causing juices to escape.

Dr. John R. Mangiardi and William Howard Kane,"Pre-Columbian Brain Surgery", say successful trepanation has taken place as far back in human time as 7,000 B.C. .

Ancient Greeks, Romans, Egyptians, British bog men, neolithic Frenchmen, and hosts of others around the globe, would trephine the skull of their patients to cure a head wound, or as a way to cure epilepsy. The urbanites of the New World carried it out with stunning success rates. We know all of this because we have archaeological evidence from human groups showing that patients received this kind of care and then lived out their lives, instead of dying from the practice.

Trepanation gained cult status in the late 20th century when it became touted as a kind of do-it-yourself cure for social angst of all kinds. Contemporary trepanists believe that boring a hole into one's skull makes them happier, more enlightened beings. Male trepanists frequently believe that a hole in the head will keep them young and vital.

Sounds like 12th century thinking to me.

Before I conclude, let me tell you a story...One of my very favorites, whether urban myth or true, is the tale of a man, newly diagnosed with epilepsy. He acquired a head injury from an ordinary car accident and the consequence was E. Frustrated by the cruel impact his new condition has made on his life, the man determines to see if he is a surgical candidate. Sure enough, he is!

He remains steadfast in his resolve, even when told half of his brain will need to be removed. "Whatever it takes to rid me of my seizures!" the man says.

So, the man has surgery to remove the section of his brain causing his epilepsy. His surgery is a complete success, he is rehabilitated, and his seizures vanish. He is a new man. But, five years later, the man is a passenger in another car and suffers a second head injury from an accident. Again, the consequence of his injury results in epilepsy...and this time the man is informed he hasn't enough of a brain left to make him a surgical candidate...

For those who have made the decision in favor of a surgical remedy to their epilepsy, my admiration is sincere. Unlike you, this is not a decision I will ever make: I like my skull intact, my brain sealed off from the air. I neither seek this kind of "cure" at the hands of contemporary surgeons, nor am I convinced of any variation of trepannist philosophy.

But, in its social and cultural contexts, I find an examination of brain surgery offers an interesting view of human endeavor.

May 1, 2007

(Blogging Against Disablism can be located by clicking the link to Diary of a Goldfish.)

The language we use around disability and discrimination varies widely, and talking about language is a very important part of understanding the way that disabled people are perceived by society... Differences may include the way that disabled people are described; as disabled people, people with disabilities, the disabled, etc.; as well as the very word for the discrimination we experience. Ableism or Ablism is the term more commonly used in the United States and thus more prevalent on the Internet as a whole. Then there's the simple and perhaps most easily understood term of Disability Discrimination... (from Diary of a Goldfish).

That little Goldfish has it right: language is key to the most significant aspect of our lives as humans, identity. Take away the right one has to choose identifiers for herself and she becomes dispossessed of selfhood. Words are not just words: they carry embedded data that serve to cue others' responses.

Put the wrong name to a thing and the meaning of the object comes into question, not the misuse of the word. So, one might say that a rose unnamed would smell as sweet, but a rose named a dandelion would never be smelled at all.

I am epileptic. Regardless of the ways others describe themselves, I am Epileptic. My life and thoughts are entwined with E. and so the one cannot be stripped away from the other. If I am to identify as a whole and complete Being, I must and do accept my manifested self as Epileptic. It is not a misused term, cry for pity, statement of heroism, bravery or courageous act.It is an expression of my totality.

I fight against disablism by pushing back against it, by choosing how I will be identified to others. I say "I am epileptic" aloud so that it is remembered along with my name and my face. I keep my epilepsy from becoming a weaponized insult by owning it.

Witholding or mitigating how I may use the term relative to myself serves others, perhaps, but does not serve me. I am not a bisected sentience and I am unwilling to infantilize myself by allowing others to determine for me how I shall be called.

But like so many things, people work against self determination in a number of ways. First, one's use of self identifiers is called into question: "well, you are much more than just that"; then corrected: "you mean a person who happens to have epilepsy, don't you?"; and then turned inside out: "Honey, you shouldn't keep bringing it up all the time. If you just don't say anything, no one will ever know you have this terrible disease."

It can be tough to resist the dark side, especially when it comes at you wearing the faces of those you love, like your wrinkled little blue haired auntie. When it does, I just take a deep breath and remember: I'm no dandelion!I am a flower with a name: I Am Epileptic!